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Wednesday, 30 May 2012

Intellectual Developmental Disorder and the DSM-V

The deadline for public input on revised diagnostic criteria for autism in the DSM-V is June 15th. There's been a lot of controversy on this, so be sure that you're well-informed and that you voice your opinion about any of your concerns. See this blog post for a starting point on where to research what's been going on with controversy:  http://www.girlwiththecane.com/diagnostic-criteria-for-autism/

Also bear in mind that there's been controversy over the revised diagnostic criteria for mental retardation, starting with renaming it Intellectual Developmental Disorder.

Yes, "Mental Retardation" is Diagnostic Criteria


And bravo to the American Psychiatric Association for finally moving away from it in the DSM-V.  Services providers Canada and the US have been using the less emotionally-loaded "intellectual disability" for at least as long as I've been involved with developmental services, and the US government has recently made a commitment to use "intellectual disability" in its disability legislation. It's going to be much easier to get people to stop using "retard" and "retarded" in reference to people with disabilities when there's no clinical term with the word "retard" in it to give those slurs any false air of legitimacy. Like most things, however, this particular redefinition of diagnostic criteria isn't that simple:

  • "Mental retardation" changes to "intellectual developmental disorder" (as I mentioned).

  • The criterion that the disability begin before age 18 disappears, replaced by one that the disability begin "during the developmental period".

  • The IQ criterion, now 70 or under, becomes more flexible, shifting the focus more to  the individual's level of adaptive functioning.

"Intellectual Developmental Disorder" Doesn't Roll off the Tongue...


Advocates at organizations such as The Arc and the American Association on Intellectual and Developmental Disabilities fear the DSM-V's use of "intellectual developmental disorder" and the departure from the more standard "intellectual disability" will confuse people. I do agree that this could potentially happen. However,  it's not like the official diagnostic term hasn't differed from the everyday language for years.  I have never in my career, unless I was speaking specifically in clinical terms regarding the official DSM diagnosis with a colleague who understood my context, spoken about "mental retardation" in my work. I use "intellectual disability" with the people I support, with their families, and, the overwhelming majority of the time, with colleagues.  I probably still will, unless a superior directed  me to use "intellectual developmental disorder". I doubt I'll be alone.

Now for the Famous "That Being Said..."


I'm fascinated by the "developmental" element in "intellectual developmental disorder", particularly in light of the fact that there will be more flexibility around the IQ standard. A lot can happen to a child before age 18. They may not be born with a condition that traditionally causes an intellectual disability, but what if a traumatic brain injury caused by a car accident leaves a teen with the severe deficits in adaptive functioning that a teen with an intellectual disability might experience? Or impair ability to perform on an IQ test to the point where it looks as if the teen's IQ has suffered a drop into the zone associated with intellectual developmental disorder? The developmental element provides a way to assist clinicians to differentiate between what is truly an  intellectual developmental disorder and what disabilities require a different diagnosis and perhaps more appropriate treatment and supports.

Because Diagnosis Determines Supports


For a long time, Ontario's definition of developmental disability (often used interchangeably with "intellectual disability" in the province) was IQ-bound (as is the DSM-IV's diagnostic criteria for mental retardation).  I've seen how this can make decisions tricky about who gets and doesn't support within the developmental services sector, particularly for people with an IQ in the low 70s. People in this "borderline" zone got from services that they needed because of a couple of IQ points.

Watching how the IQ criterion sometimes prevented people from getting services that they need, creating more cracks through which people could fall, was very frustrating for me and for others in social services. Knowing that Ontario's definition of developmental disability is now less IQ-bound and more skills-based is a relief. I was relieved the see the APA making a similar shift in its proposed diagnostic criteria for intellectual developmental disorder. Unfortunately, I haven't been in a position to get any hard data about how that shift is working for people with developmental disabilities in Ontario, but the move does make intuitive sense to me.

The Bottom Line


I do have concerns:

  • I'd prefer that the APA stay away from the word "disorder"

  • I think that the developmental period in which a person needs to develop the signs of  an Intellectual Developmental Disorder in order to receive the diagnosis needs a description.

  •  I think that diagnosticians are going to want to know how much latitude they have with the IQ criterion, but I assume that they will receive information about that.

We'll see how this goes.

Please submit any concerns on proposed redefinition for diagnostic criteria in the DSM-V before June 15:

Intellectual Developmental Disorder: http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=384

Autism Spectrum Disorder: http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94

Monday, 28 May 2012

My Brain AVM Story: May 29, 2000 - Open-Brain Surgery


I had two surgeries to fix my brain AVM. One was the open-brain surgery, of course, but the first was an embolization. People who have had an angiogram or angiography will be familiar with embolization. The doctor fed a wire through the artery in my thigh, up through my body into my brain. He used an adhesive attached to the wire to reduce the size of the AVM. That's a very simplistic explanation, but it's the gist of what happened.

I have to comment on this, because I still think it's amazing. I'd never had surgery before or anaesthesia before.  The anaesthesiologist asked me to count backwards from 100, and suddenly I wasn't awake - and then I was. It seemed like I had just closed my eyes. I wouldn't learn until later that the surgery had taken four hours.

"Can we get this started?" I said, annoyed.

"It's done," said a nurse that I didn't recognize. "You're in the recovery room."

I was stunned.

Bring on the Open-Brain Surgery!


I don't remember much of the weekend that followed. I do remember being so convinced one night that I heard my dog's toenails on the floor in my room that I called the nurse to ask who had let her in (more a testament to the drugs they'd given me than anything else). She assured that there was no dog in the room...but my family's mutterings during altered states of consciousness in hospitals is a whole other blog post.

I do remember the night before I went in for my open-brain surgery, just a couple of days later. I was still 
in the hospital. I sat with my family. I called my friends on the pay phone.  I took a shower, since I didn't know when I'd next get one after the open-brain surgery. I made sure that my dad knew where my letters to everyone were, in case something went wrong with the open-brain surgery. I did sleep, surprisingly.
And early in the morning, twelve years ago today, I waved to my dad and my sister as the nurses wheeled me away on a stretcher for open-brain surgery.

There wasn't much prep. They only had to shave a little bit of my long hair, which was really nice, because I'd been psyching myself up to lose all of it. I thought that they just automatically shaved your head for open-brain surgery. I'd later cut my hair short, but I was happy to keep it for the moment.  In the operating room, I talked briefly with my neurosurgeon, Dr. Tymianski. The anaesthestiologist had me count back from one-hundred, and suddenly I wasn't awake -- and then I was. And I was annoyed - because there was a tube down my throat and a piece of plastic over my tongue, and no one would move it. You can read about that here: http://www.girlwiththecane.com/finger-spelling/

Sometimes things don't happen quite the way we think they will.  Dr. Tymianski and his surgical team weren't able to totally fix all of the AVM during the open-brain surgery. A piece had to be left, which later sealed itself off and is no longer an issue. A bleed in an area not far from the AVM site a couple of days after the open-brain surgery caused the stroke that wiped out my left side and so drastically changed the course of my life.

But I knew the risks. Dr. Tymianski told me that there was a 10% chance that the open-brain surgery would cause irreparable damage, and a 15% that it would cause damage that we could repair. That meant there was a 75% chance that nothing bad would happen. And I'd gotten through my first stroke with no damage, but statistically, if I left the AVM alone, I was going to have at least one more. Who knew damage the next one might cause?

So I played the odds and I hit that 10% that no one wanted me to hit. As my father said, "You can't expect someone to put a Mixmaster in your head for 14 hours and come out totally affected."

But he also said, "Just because your life turns out differently than you expected, doesn't mean that it has to turn out worse." And he was right. :)

Let's all toast to that today: Just because life turns out differently than you expected, doesn't mean that it has to turn out worse.


Thursday, 24 May 2012

The Medical Model of Disability and Civil Rights

Big thank you to William Peace over at http://badcripple.blogspot.ca/ for linking to and commenting on the National Disability Rights Network's recently-released report, "Devaluing People with Disabilities". I was not aware that the report was available, and I found it fascinating. I do worry, like William, that the people who read the report won't be the ones that really need to read it, but I do like how thorough it is, how it frames the fight for disability rights as a civil rights issue, and that it uses the voices of self-advocates. Perhaps believers in the medical model of disability (especially people who support the use of the Ashley Treatment, discussed extensively in the report) will read it just out of curiosity, or a desire to justify what they believe, getting the report outside of the "preaching to the converted" circle.

"Devaluing People with Disabilities" uses the Ashley Treatment as a jumping-off point for discussion about disability rights as civil rights, illustrated specifically in the the ways in which the medical model of disability permeates ethics committees, hospitals and court systems.  Consequently, people with disabilities are, more often than anyone should be comfortable with, forced to undergo medical procedures (or have life-saving medical procedures, treatment, or even simple nutrition withheld) because of their disabilities.

The Ashley Treatment, the Medical Model, and Civil Rights


The Ashley Treatment refers to a number of surgeries and hormone treatments performed on a six-year-old girl with physical and intellectual disabilities back in 2006. Ashley's parents, ostensibly to preserve her quality of life as much as possible, had her growth attentuated so that she'd always remain small. Doctors also gave her a hysterectomy and removed her breast buds, so that she'd not have to deal with menses or the sexualizing effect (minimizing, the parents said, her risk of being abused). The parents called Ashley their "pillow angel", and justified their choices for her by saying that she didn't have the cognitive capacity to recognize what had been done to her or what it meant she'd be missing.

The ultimate legal problem with the Ashley Treatment (and any medical treatment/lack of where parents, a doctor, or a court decides that a person is too "disabled" to make their own decisions about their bodies and what they choose to do/not do to them) is that it's unconstitutional - hence the civil rights component.  It's very much a civil rights issue, even though most people choose not to recognize it as one. There are cases, of course, where a person with a disability has a power of attorney for healthcare, but that's very different than a doctor advising a family to remove nutrition when there's no terminal disease, or not perform a life-saving surgery, because a person's quality of life and prospect for "contribution to society" with their disabilities is so "low".

The point is, we treat people with disabilities in very different ways when it comes to health care than we do people without disabilities. We would never think of violating the civil rights of a six-year-old without disabilities by removing the uterus and breast buds - why would one even consider such treatments? Yet, for one with disabilities, it was okay to alter her body in drastic and unnecessary ways, to deny her the chance to mature into a grown woman, and to take away her option to have children.

Kurt Decker, Executive Director of the National Disability Rights Network, puts it nicely in the introduction to "Devaluing People With Disabilities":  "These conversations happen because the persons being considered are viewed as having little value as they are.  They are considered as not fully human, endowed with inalienable rights of liberty, privacy, and the right to be left alone - solely because they were born with a disability."

If that's not a civil rights issue, I don't know what is.

Read "Devaluing People With Disabilities", but be prepared - it will shock you. It should, at least.

http://www.disabilityrightswa.org/newsletter/drw-news/ashley-report-docs/Devaluing%20People%20with%20Disabilities%20final.pdf

William Peace's thoughts on the report: http://www.blogger.com/comment.g?blogID=1556371561007953336&postID=1277439375401526973

More about the National Disability Rights Network: http://www.ndrn.org/

Image credit: cteconsulting / 123RF Stock Photo

Tuesday, 22 May 2012

John Kerr: Benefits Cut, Fit to Work?

And so it begins in Britain. John Kerr of Dundee, Scotland, who is blind, deaf, eats via tube, and doesn't communicate verbally will have his benefits cut on June 7th because the person who filled out forms on his behalf that the Department of Works and Pensions required made an error.  I don't know what forms, or the nature of the error; media coverage on this over the Internet is scarce. According to disability blogger and advocate Nicky Clark, however, the form was substantial (over 30 pages), and Kerr's options now are either to find employment or go through an appeals process to attempt to get his benefits reinstated.

http://nickyclark.blogspot.co.uk/2012/05/shame-of-blame-game.html

Waiting on John Kerr Details


I admit that I've known about John Kerr and his story story since last Friday and held off on blogging about it. I've wanted to see what the Department of Works and Pensions would do.  I've seen the Ontario Disability Support Program send letters saying that income supports have been cut off because the recipient hasn't provided requested information, and that they can appeal the decision; often a phone call to the intake worker assuring them that the requested information is indeed on its way is enough to get the suspension reversed before the next cheque is issued (depending on the date and the information required). But according to Nicky Clark, this error is going to take weeks to rectify, potentially leaving John Kerr and his caregivers in a very bad financial situation.

Who's to Blame for What's Happened to John Kerr?


I've seen arguments that the people who filled out the form for John Kerr need to lie in the bed that they've made regarding his benefits cut. After all, the government can't be held responsible if someone makes a mistake and creates a situation like this, whether they intended to or not, they argue.

My technical writing training tells me otherwise. If these forms are so unclear that someone could make a mistake so crucial that it costs them their benefits, then they're not well-designed enough. The design flaw could be a number of things (or many of them):

  • It's not clear on the form what the response process needs to be. Where does the form need to go? By what date? Addressed to whom?

  • It's not clear how to respond to respond to the questions.  On scale questions, which end of the scale is most severe, and which is least severe?  What if two answers apply to a given question? Can you attach paper if you need more than the allotted space to comment?

  • The questions themselves are unclear.  What if you have a learning disorder and you're unsure to whom you should go for help? What about people with low literacy levels?

  • It's unclear how crucial accuracy is. Clearly it was for this particular form.

Obviously a form can't be developed that meets absolutely everyone's needs, but there *is* a process by which technical writers try to make documents as accessible to as many people as possible. Government forms aren't particularly user-friendly (as I'm sure all of you know), which is why I used to spend a lot of time with people I supported and their families assisting them to fill out forms - precisely so this sort of thing didn't happen. Not that I'm perfect and don't make mistakes, but I've filled out a lot of the forms now and find them a lot less terrifying than people I worked with and their families did.

No One Should Live in Fear of Losing Benefits Over One Mistake On a Form


Or two...or three. This story and its suggestion that you have to be a robot who doesn't make mistakes instead of a human being who may be dealing with multiple challenges as you fill out a large government form suggests to me that this is just another way that Britain is experimenting with thinning the ranks of people on benefits. It's underhanded and insidious, as many people (like John Kerr) do need substantial assistance filling out the forms, and are powerless as to whether it's submitted with mistakes or not.

And it's just plain not right.

Me and My Brain AVM


I'm 34 years old.  Up until I was 22, I appeared pretty healthy (well, a little overweight, but not enough to cause any major problems).  But I discovered that year, after I had a small stroke in a job interview (true story, I swear) that I wasn't as healthy as I appeared. Some medical testing revealed that I had a vascular condition in my brain called an arteriovenous malformation, or a brain AVM.

Brain Arteriovenous Malformation (AVM)


The brain AVM (you can get an an AVM anywhere in your body) had been there since I was born, but since I'd never been dropped on my head (for which I'm grateful to my parents, don't get me wrong) or fallen on my head or been hit hard on the head hard enough to go to hospital and have a CT scan, no one knew it was there.

A brain AVM doesn't tend to give people much trouble until early adulthood or older...when it begins to leak blood into parts of the brain where it shouldn't be. This is called a hemorrhagic stroke, and it can cause a lot of problems. Fortunately for me, that first stroke didn't leave me with any aftereffects. But the brain AVM needed to be treated before it bled again and possibly did do some damage.

Treatment Tales


The Brain AVM team at Toronto Western Hospital evaluated my case and discussed my options with me, and we finally settled on an embolization and a craniotomy. The embolization made the brain AVM much smaller, and then they were able to seal off almost all of the brain AVM with the craniotomy. However, I also had another a stroke - a much bigger one this time. I lost most of the function in my left arm and leg,  Over a decade later, I'm still living with the effects of that stroke.

I've been lucky to have access to great physiotherapy and occupational therapy, though, and a wonderful support system. I live on my own, I have a job, and I'm still noticing function return in my arm, hand, and leg even after eleven years (the "ceiling" for that sort of thing is usually five years, the doctors tell me).
You'll be hearing more about my story in this blog (but not exclusively, of course). Here are some terms you may find useful to know:

A Short Brain AVM Glossary


Arteriovenous Malformation (AVM) - A defect of the circulatory system that is generally believed to arise during embryonic or fetal development or soon after birth. It is comprised of snarled tangles of arteries and veins.  AVMs can occur anywhere in the body, but are especially dangerous when occurring in the brain or spine.

Cerebral Angiogram – Imaging tool used to detect and show the characteristics of brain AVMs. Angiography provides the most accurate pictures of blood vessel structure in brain AVMs. The technique requires injecting a special water-soluble dye, called a contrast agent, into an artery. The dye highlights the structure of blood vessels so that it can be recorded on conventional X-rays.

Conventional Surgery – Open-brain surgery. Involves entering the brain or spinal cord and removing the central portion of the brain AVM while causing as little damage as possible to surrounding neurological structures. This surgery is most appropriate when an brain AVM is located in a superficial portion of the brain or spinal cord and is relatively small in size.  Also called a craniotomy.

CAT Scan – Computed Axial Tomography scan. CAT scans use X-rays to create a series of cross-sectional images of the head, brain, or spinal cord.  They are especially useful in revealing the presence of hemorrhage.

Endovascular Embolization – Surgical procedure in which the surgeon guides a catheter though the arterial network until the tip reaches the site of the brain AVM. The surgeon then introduces a substance that will plug the main part of the brain AVM, correcting the abnormal pattern of blood flow. The materials used in embolization include  fast-drying biologically inert glues, fibered titanium coils, and tiny balloons.

MRI – Magnetic Resonance Imaging. Uses magnetic fields to detect subtle changes in neurological tissues.

Radiosurgery – Procedure that involves aiming a beam of highly focused radiation directly on the AVM. The high dose of radiation damages the walls of the blood vessels making up the lesion. Over the course of the next several months, the irradiated vessels gradually degenerate and eventually close, leading to the resolution of the AVM.

Definitions are used courtesy the National Institute of Neurological Disorders and Stroke (http://www.ninds.nih.gov/) with their permission.

Monday, 21 May 2012

Teachers Abusing Students With Disabilities


It seems like more and more stories about teachers abusing students with disabilities are popping up in the news these days. There's the story of the Cherry Hill, New Jersey father who discovered that his son, a 10-year-old with autism, was being verbally abused by his teacher, and the more recent story about the 14-year-old with brain damage in who was wheeled into a box in his wheelchair and sometimes shut in it to deal with his outbursts. My question, on reading these stories has been: How many untold stories of teachers abusing children with disabilities exist for each one that gets reported?

Teachers Abusing Students with Disabilities: How Big Is the Problem?


The small amount of research into teachers abusing students in general suggests that the (reported) incidence is quite low.  However, students with disabilities are easy targets in educational systems where teachers are overworked and expectations are very high:
  • Students with disabilities who have been mainstreamed into regular classes are often fighting for increasingly fewer Educational Assistant supports
  • As class sizes grow, teachers have to manage learning needs on a wider and wider spectrum within one classroom with less individual support for students.
  •  In Ontario at least, while all teachers are required to take *some* special education courses are part of their training, they're not required to specialize or stay current in it unless they plan to work in Special Education. The lack of training may mean that teachers don't know how to deal with a student's frustrating behaviours and may end up doing something inappropriate out of ignorance, especially if resources like IEPs and behaviour/safety plans aren't easily accessible at all times.
And, of course, the characteristics of some disabilities make students who have them very vulnerable:
  • A non-verbal student with few ways of communicating is much less likely to report abuse.
  • Some students with disabilities may not understand that they're being abused, and so may not report it.
  • Power differentials may make students with disabilities afraid to report a teacher abusing them.
I'm in no way suggesting that all teachers abuse students with disabilities. However, it seems telling that once parents started to wire their children with disabilities and send them to school, as the Cherry Hill father did, all sort of report of teachers abusing students with disabilities verbally began to come in. http://www.chron.com/living/article/Parents-wire-kids-to-prove-teachers-verbal-abuse-3509966.php Not that wiring your children is necessarily a good idea, because of potential legal ramifications. But I can see why a parent of a child who doesn't communicate verbally might take that step. No matter how frustrating a teacher's job circumstances might be, teachers abusing students with with disabilities (or any student, for that matter) is wrong.

Teachers Abusing Students with Disabilities: I Don't Know Why This Is So Complicated


Teachers and Principals:
  • Refer to behaviour/safety plans and strategies, and follow them. If something strikes you as "Wow, I wouldn't want that being done to my kid", request that the plan be reviewed with your Board's behaviour specialist or a behaviour specialist from an agency.
  • Keep families in the loop. Review behaviour plans/strategies each year at the IPRC.  Keep a communication book going between the school and home.
  • Keep each other accountable as staff for what sorts of behaviour interventions you use, when, and why.
  • Remember that when students with disabilities do report, they may not be able to do so as eloquently as students without disabilities. Sorting out the details may take more work and may have to involve paraprofessionals. The complaint is still valid, needs to be investigated, and the needed resources should be brought in without hesitation.
If you wouldn't do it to a student who doesn't have a disability, don't do it to a student who has a disability. If you wouldn't use a method of discipline with the parent in the room, there's something wrong, and you need to reconsider what you're doing.
Most special education teachers are in that field because they love it and they want to be there. But the ones that would put a student in a box or call students names don't belong in the classroom. Let's stop teachers abusing students with disabilities and keep schools safe for all students.
More on teachers abusing students with disabilities: 



Wednesday, 16 May 2012

Disability Living Allowance Cuts in Britain

As I've said before in this space, I blog about the welfare benefit reform and the austerity measures in Britain because, as a Canadian citizen, they deeply concern me.  I worry about what's going to happen to friends in Britain who have disabilities and rely on benefits like the Disability Living Allowance to help with the costs of the specialized equipment and attendant care that they need to continue to live in their homes. I also worry about the anti-disability rhetoric surrounding welfare benefit reform, because I hear it in Canada and the US, too. I've wondered if one of those countries will be next to make disastrous cuts to disability supports.

Disability Living Allowance Cuts


The Disability Living Allowance cuts and the anti-disability rhetoric reached an all-time high in Britain this week. On Monday, 500 000 people (1in 5 claimants) have started to live in fear of having their Disability Living Allowance cut off, including veterans. They may not be eligible for the stripped-down benefits program that will eventually replace the Disability Living Allowance, the Personal Independence Payments.  All people on Disability Living Allowance will be reevaluated before seeing if will receive Personal Independence Payments, as one of Secretary for Ministry of Works and Pensions Iain Duncan Cameron's problems with the system is that people are given "lifetime awards" for Disability Living Allowance. and never reevaluated, allowing them to "fester".  He blames this as one of the reasons that the number of Disability Living Allowance benefits claimants has risen 30% in the "past few years".

http://www.guardian.co.uk/politics/2012/may/14/disability-benefits-slashed-half-million

Amelia Gentleman of "The Guardian" reports that disability advocacy groups believe that the 30% rise is for different reasons, and points to remarks (not made in the article, but that I have I've read before) that Duncan Cameron's changes are to eliminate benefit fraud. The British government itself acknowledges that Disability Living Allowance Fraud is at 0.5, so substantially cutting or eliminating the benefits of 30% of the claimants seems excessive.

http://www.guardian.co.uk/society/2012/may/14/disability-living-allowance-reform-analysis?INTCMP=SRCH

Anti-Disability Rhetoric


However, if you look at articles like this, you can see where people might get the idea that people with disabilities are just vindictive bullies out to get everything they can from whoever they can.  And that if you look like a disability, you might just be pretending to get off work:

http://blogs.telegraph.co.uk/news/cristinaodone/100157702/iain-duncan-smith-must-not-give-in-to-disability-bullies/

A couple of notes on Odones' article:

  • Those PETA-esque protest tactics (the fake blood, etc.) have apparently not been used by Hardest Hit since the '90s.

  • What is Odones' definition of "fraud"? Does it include an alcoholic or a drug addict? If so, is it going to include a person who has committed a crime while in a manic state? When did disability become about morality and who made Odone the judge and jury?

  • As far as I'm concerned, if you want to chain your wheelchair to public property, it's as legitimate a form of protest as any. It's not "bullying", and it certainly doesn't make you a member "powerful and extremist lobby".

And if Christine Odone has witnessed people with disabilities "fighting dirty" - it's because they've had to.  Because no one else will listen otherwise, and because it's our independence...our lives...at stake. She would fight too.

Thank you to Sue and and all the people using so many of their spoons to work so hard against what's happening in Britain. You all inspire me. :)

Tuesday, 15 May 2012

Spoon Theory and People With Disabilities

In a few disability blogs and Twitter "tweets" now, I've seen references to spoons: using or spending spoons, not having enough spoons to do something, and how many spoons a given a given activity uses. I just assumed it was some of disability theory with which I was unfamiliar, and I kept forgetting to look it up. Yesterday I remembered, and my research led me to Christine Miserandino's Spoon Theory.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

The Basics of Spoon Theory


Miserandino developed Spoon Theory as a way to explain to her best friend how it felt to have lupus. The premise is that people start the day with spoons, and as they perform their tasks of daily living, spoons get taken away.

A person without disabilities or illness may start each day with an unlimited number of spoons, because their bodies are healthy and there's nothing to stop them (save the usual limits of what the human body can do and the circumstances imposed on them by others) from them getting done what they want to in a day.

A person with disabilities or illness, because of the physical challenges she faces, may only get ten spoons to get everything done in a day. Depending on her disability, six of them could be gone just getting ready to get out the door to a doctor's appointment. She may be able to borrow against some spoons for the next day, to be sure that she finishes the appointment, but then she might really need to rest the next day.

It's an interesting way of looking at things. I really urge you to read Masarandino's essay in full.

Looking at Spoon Theory - Where Do You Spend Your Spoons?


Looking back over the course of my recovery, I can definitely see the moments where I've had fewer spoons to spend than the average person. I think that right now I try to live like I have unlimited spoons, and I'm slowly becoming unconvinced of the wisdom of that.

My left leg and arm are much more mobile than they used to be, granted, but they're still heavier to move than my right leg. I should probably be getting more rest than I do.

I'm choosing to spend most of my spoons  on trying to write and get my business launched, and on social interaction (which I don't get a lot of and know I need more of).  And I work pretty hard. And I'm pretty hard on myself when other things fall by the wayside as all of this happens.

There's other stuff, but it's boring and doesn't need to be shared.

My point is, maybe my spoons still just aren't unlimited...as much as I'd like them to be.

I'll have to think about this some more. Read Christine Miserandino's Spoon Theory essay.  Here's the link again:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Image credit: songbird839 / 123RF Stock Photo

Friday, 11 May 2012

Musings About "Inspiration Porn"...

This week, I was introduced to a interesting concept by tumblr bloggers thoughts_of_nothing and and gimpunk some other tumblr bloggers with disabilities about which I've never heard: "inspiration porn". It all focused around this picture, which I'm sure many readers have come across if they've spent any time on Facebook or Pinterest:



Heck, it was on one of Running Steps' Pinterest boards when I went to check. I've since removed it.  It had just never occurred to me that I should find it insulting - but I should have.  I'm going to be evaluating what I put up on the Pinterest boards much more closely from now on, to see if the pins fall into that "inspiration porn" category.

"Inspiration Porn": Is the Label Fair? The Case Against


It's not that Scott Hamilton (and Oscar Pistorius, the athlete in the picture) hasn't accomplished amazing things. And the value of that particular piece of photography for people with disabilities is that it encourages those who may have the resources to take life by the horns, as Hamilton did, but are letting "I can't, because I have a disability" hold them back to get back out there and start saying, "I can," again.

"Inspiration Porn" Is the Label Fair? The Case For


Not everyone with disabilities has the resources and supports that Scott Hamilton had/has to get out there and make their dreams a reality. And for those that are in that boat - sometimes a positive attitude just isn't enough. A positive attitude isn't stopping the British government from people whose disabilities are far too severe to allow them to work from having their benefits cut off, forcing them to look for jobs that they have no hope of getting when they are in such ill health. Closer to home (for me), cuts to the Ontario Disability Support Program make accessing its Income support component significantly and increasingly difficult for new applicants each year, and cuts to both the Income Support and Employment Support programs make it more and more difficult for people who are on the program to move off of it.

All of this as the unemployment rate for people with disabilities in the United States edges toward almost twice the rate for people without disabilities, and as New York City continues to put up stink about making even more than 1% of its taxis accessible.

Given these realities, slogans like, "The only disability is a bad attitude" are almost an affront. "Inspiration porn" only makes people with disabilities who are often trying very hard to cope with issues like chronic physical/mental/emotional pain, constant hospitalizations, fears about where the money to pay for housing/food/medical bills/their family's needs is coming from (whether it's because of unemployment or underemployment or income support cuts) feel badly because they can't muster the support, strength, or enthusiasm to get out there and start living their dreams as people with disabilities.

So, is the "inspiration porn" label fair? Unfair? Somewhere in-between? I think I may need to think about it a bit more. It's certainly an attention-getter, and it's probably going to make my blog show up in more porn-related searches than usual, but I think I'll let you decide from here.

Before I Get Attacked


I don't think any of that means that Scott Hamilton should stop doing what he does. It's not his fault that people are struggling. And, like I said, I think his message has a place. Not just for people with disabilities, but for everyone. Regardless of your life circumstances, a bad attitude will get *anyone* stuck like nothing else can.

But I do understand why some people with disabilities take have adopted the phrase "inspiration porn" for these kinds of images, and why it hits them particularly hard.

I need to think about this, and write some more about it. Have a great weekend, everyone.

thoughts_of_nothing's blog about "inspiration porn": http://thoughts-of-nothing.tumblr.com/post/22192050450/blogging-against-disablism-day

Tuesday, 8 May 2012

Enough from Me About Ricky Gervais...For Now, At Least

If you've been watching any of my social media stuff, you know that I've been busy doing the "BADD Tour" - reading and commenting on "Blogging Against Disablism Day" posts (see badge on front page). They've given me so much to think about and and so many things on which I want to blog. But today I want to blog on something that's been lurking in my head since the weekend: how I'm biased, and why it means that I *shouldn't* blog on some things. Especially Ricky Gervais.

How I Decide on Blog Topics


I do it a number of ways:

  • Sometimes I just blog about personal experience.

  • I have Google alerts set up for "disabilities" and other disability-related terms. Often the alerts bring me news stories or updates on current events.

  • I read blogs by other disability advocates and I subscribe to the ones I really like.

  • I read a few well-respected disability ezines.

  • I keep an eye on my Twitter feed for links to news stories and blogs that look interesting.  I have a lot of great Twitter contacts who post a great deal of useful information.

Most of the time this all works fine. I know that my writing isn't up the highest journalistic standards, and that sometimes both sides of the story aren't fully told - but I try to acknowledge that there always are two sides to a story. But I don't claim to be a journalist. I definitely know that I'm not. I know that my experiences make me too biased to say I'm totally objective with what I write here, and I'm okay with that. Mostly.

It wasn't until over the weekend, when I started looking for a place to watch "The Undateables" online, and "Derek", the newest television series by Ricky Gervais, that I realized that even I can only take that so far.

Good Ol'Ricky Gervais


I did another post about Ricky Gervais and "Derek", based on what I'd heard of it so far. http://www.girlwiththecane.com/derek-noakes/. I came to the conclusion that I might be unfairly biased toward the show on the basis on how Ricky Gervais had handled the "mong" incident on Twitter last year.

When I put the video post on YouTube, I took a beating for, among other things commenting on the show without seeing it. So, I've been trying to find a way to view a whole episode of the show online (difficult, as I can't view Britain's Channel 4 content from overseas, and there doesn't appear to be a way view it in North America online that I can find, except for some brief clips). But, as I searched for a way this weekend, I suddenly realized that it wouldn't mattered. I've heard so much about Derek Noakes, the character that Ricky Gervais plays, resembles somebody with an intellectual disability (Comedian Stewart Lee even said that the character resembles someone with Down's Syndrome) that I'd be looking for the ways in which that's true. I'd be looking for ways in which the show is mocking people with disabilities. I can't trust myself to watch in an even remotely objective manner.

Same with "The Undateables", which I'd also planned to view. I've just heard too much about how offensive it is to people with disabilities. I would be looking for it, so I could jump on it.

Maybe I just need to stay away from commenting on the entertainment world and people with disabilities, or at least aspects of it. I will have to think on it. If something comes up with Ricky Gervais again, perhaps Nicky Clark would do a guest post. A fabulous disability advocate, ahe has talked with Ricky Gervais at length about disability issues, and has a great deal of respect for him.

So...no worries, Ricky Gervais. I just can't sort my feelings out enough about you to be fair, so I'm going to step back for now. But I'm still going to be watching, so you be fair too.

More about "Derek": http://www.telegraph.co.uk/culture/tvandradio/9200872/Ricky-Gervais-in-Derek-Channel-4-Review.html

More about "The Undateables": http://www.telegraph.co.uk/culture/tvandradio/9183670/The-Undateables-Channel-4-review.html

Sunday, 6 May 2012

Ballet with Disabilities (and Inclusion)...My Saturday Mornings

Recently, I got a ride home from an event with the woman who taught the adult ballet class in town a few years back. It was a very small class. There were three of us, including me, and then the instructor, Kate. We met for forty-five minutes on Saturday mornings to do relatively simple barre exercises: pliés, and tendus, and frappés, and battements, and several other exercises that I'd forgotten from the ballet training of my pre-high school years. It was all very relaxed, with lots of laughing. There were moments where my right arm would stretch in second position at  the barre and for a brief, wonderful moment, I'd actually feel like a just a dancer again, and not someone giving everyone else a first-hand look into ballet with disabilities.

I gave up the classes when a friend became very ill and I needed to have Saturdays open in case there was an opportunity to travel to the city to visit him. I missed the classes, though. There was a tendu combination that I could never get, that haunted me. Sometimes, when I'd wait for rides outside my apartment building, I'd put my hand up against the wall and practice it. I kept watching Kate's ballet school schedule to see if she was offering the class, but I never saw it.

So I was very happy to hear from her in the car that day that she actually does keep it running. She just doesn't advertise it. The same two women come, and she invited me back. I've just finished my second week.

Sarah and Ballet with Disabilities


I really liked that class, and still do, because I'm not a person with disabilities when I'm in it. Kate demonstrates what we're going to do, ("Because we're her Alzheimer's class," my classmate Helen jokes. "It's all brand new every week!") and then leaves it up to me to modify the exercise if I have to, in whatever way I have to. Which is awesome, because:

  • My left foot only points very minimally

  • If I'm concentrating on moving my left side, I have *no* turn-out. I'm lucky if I can get my left foot back into proper position if I lift it off the floor

  • Sometimes I forget to move my left arm

  • Sometimes I have to face the barre and grab it with both hands to do some exercises, or I'll fall over.

Nobody cares that when I do the exercises on my right side, my foot arches nicely and my arm is pretty and that when I do them on my left side...I'm just a mess.  Or that I can't do a rise, or a grande plié.  And they giggled with me when, after a particular difficult combination, I said,

"I was saying all the instructions in my head along with you, but apparently my foot decided that I could do that all I wanted, but it was just going to sit there in the air."

(That was was a *tad* worrying, by the way...it felt like my foot was so confused by what was being asked of it, that it just wasn't even going to try to keep up, if that makes sense.)

But that's not the point. The point is that at the beginning of my stroke rehabilitation process, I never would have dreamed that I could feel so comfortable in a highly physical environment like a ballet class. And it's got nothing to do with my abilities - it's got to do with the attitudes of the people around me.

True inclusion hasn't got anything to do with ramps and elevators and accommodations of any sort - it has to do with attitudes.

Many of the "Blogging Against Disablism" posts make the same observation - click on the badge on my homepage to read the BADD 2012 posts.

And speaking of ballet with disabilities...it may not be classic ballet, but I dare you not to be amazed by these two young people...

http://spluch.blogspot.ca/2007/12/disabled-dancers-dazzling-ballet.html

P.S. If you're going to be staying in the New York City area any time soon and you're looking for a hotel with amazingly accessible rooms, check out the new "Best" on the "Accessibility Bests and Worsts" page...

Thursday, 3 May 2012

Rabbi Boteach and Children With Disabilities...Revisited

So, my friend Geoff (name changed) and I have been having a Facebook debate on the Rabbi Boteach blog on why God allows children to be born with disabilities. Here's the blog in question:

http://www.huffingtonpost.com/rabbi-shmuley-boteach/why-does-gd-allow-children-to-be-born-with-disabilities_b_1464556.html

Geoff and I often debate American politics. You'd expect that it would come to blows more often than it does, him being a staunch Conservative and me being a bleeding heart Liberal. However, we find that often our beliefs match, more or less, on the basics of many things.  How we've arrived at those beliefs is often a different story.

We debated the Rabbi Boteach blog the way we do American politics - calmly and respectfully (well, we debate that way most of the time, anyway). And, as usual, I think each of us made the other do some thinking.

Debating Rabbi Boteach


Geoff said that he couldn't understand why I had problem with doctors working to cure disabilities. I don't. I'm not against researchers working to find cures for conditions that cause disabilities or interventions that improve quality of life.  I do have a problem with the blanket assumption in the Rabbi Boteach blog that disability = suffering, and therefore must be eliminated. Certainly some forms of disability are very painful and very isolating and cause a great deal of suffering...but I'm not suffering. My friend Martyn, who has spinal muscular atrophy, uses a wheelchair, and can't lift much more than a 1-litre bottle is having the time of his life doing humanitarian work in Spain right now. There are plenty of people who have severe hearing impairments and reject the cochlear implant and any improvement it could offer, for various reasons.

http://www.guardian.co.uk/commentisfree/2011/aug/05/deaf-people-cochlear-implants

"The idea that difference must always equal suffering and a yearning to be "normal" is ablist thinking," I said to Geoff, which he appeared to understand. But he was concerned that I misunderstood the Rabbi's desire that researchers find cures with a desire to *force* cures on people afflicted with disabilities.

I do think I came away from the Rabbi's blog with that impression, but I really had to think about why. I think it was his use of the word "purge" when he was talking about Down's Syndrome.  "Purge" is such an emotionally loaded word for me that that seeing it used in relation to Down's Syndrome had really set me off, quite frankly. In my world, you purge to get rid of things that disgust you, that you don't want near you, that you want no part in your life. I've never felt that way about Down's Syndrome or anyone in my life who's had it. I'd rather "purge" the attitudes that make my friends with Down's Syndrome or any other disability feel excluded, unsafe, or just generally like second-class citizens in their own towns, states/provinces, and countries.

But Geoff always encourages me to read carefully and monitor whether my emotions are getting the better of me when I'm reading, lest I miss the whole story.  I went back and read the Rabbi Boteach blog again and saw Geoff's point that Rabbi Boteach was answering the question about children and disabilities from several vantage point: theologian, counselor to parents who'd just found out that their child would be born with Down's Syndrome, and as a refuter to the argument about children with disabilities being advanced souls in sinless bodies. He'd always came back to the idea that children with disabilities are precious and worthy of life, and he eventually hit the points on which he and I agreed: That children with disabilities are no more or less "divine" than any other children, and that we need to find ways to rally both natural and agency supports around children with disabilities and their families to give them as fulfilling a life as possible.

And for someone that believes those things and is willing to work for them...I can overlook the other stuff that didn't sit quite right. I apologize to Rabbi Boteach for any of my knee-jerk reactions to his wording that might have caused me to misunderstand the rest of his message.

And thanks, Geoff, for helping me get on track again. :)

Wednesday, 2 May 2012

Meanwhile, Back in Britain...

This is just heartbreaking.

http://benefitscroungingscum.blogspot.co.uk/2012/05/do-you-know-what-youre-asking-badd.html

Rabbi Boteach Talks About Children With Disabilities

I generally make it a policy to stay away from religion on this blog. But I'm going to make an exception today to address Rabbi Boteach's recent blog on the "Huffington Post" website about Judaism's position on why children are born with intellectual disabilities (or mental disabilities, as he says).

http://www.huffingtonpost.com/rabbi-shmuley-boteach/why-does-gd-allow-children-to-be-born-with-disabilities_b_1464556.html?ref=religion

What I Can and Can't Address about Rabbi Shmuley Boteach's Argument


I'm not Jewish, nor do I have an academic background in Judaism. I took Introduction to Judaism in university. It was very interesting. I enjoyed it. However, I'm in no way qualified to argue the theology behind Rabbi Boteach's argument, nor would I want to. He's entitled to believe what he wants.

However, I was disturbed by some of the real-world implications of his theological views. This isn't a new experience for me. Many religions have theological views that, in practice, leave me disturbed. I figure that I can talk about that.

What I Like About Rabbi Boteach


Rabbi Boteach is responding, with his blog, to another Jewish scholar's argument that children with intellectual disabilities are highly evolved souls. God has made it impossible to sin by putting them in them in their disabled bodies, making them innocent and worthy of our reverence. Rabbi Boteach sees this attitude as "justifying" the "suffering" of the ultimate in innocent children, and therefore wrong. Since Judaism works to eliminate suffering, he argues, it's wrong to pretend that children with disabilities have a "lofty or divine purpose."

I agree. Children with disabilities face different challenges and may different ways of expressing their gifts than children without disabilities, but there's nothing about them that makes them any "better" or "worse" than any other child.
Rabbi Boteach and I also agree that a comprehensive system of supports, both natural and agency-based, is vital if people with disabilities are to lead fulfilling lives. Good on him. However...

Rabbi Boteach and I Disagree...


Rabbi Boteach can't seem to get away from this idea that people with intellectual disabilities are innocent children that will never grow up. I think that this stereotype is particularly damaging for people with intellectual disabilities. They *do* become adults, and we don't do them any favours when we treat them like they're children whose innocence makes them unable to handle learning about how the world works. In fact, that can make them much more vulnerable to all kinds of abuse.

There's also an uncomfortable (for me, at least) slant towards "If it looks different, we should "cure" it" that runs through the whole article. Yes, Down's Syndrome has its own set of challenges for a child and for the family supporting the child. But many, many people with Down's Syndrome grow up to live happy, healthy lives - as do people with various disorders on the autism spectrum, cerebral palsy, spina bifida, etcetera. The problem isn't that these people need a "cure". It's assumptions like, "They *must* be suffering, so they must *want* a cure!" that bother me, assumptions about what the people with the conditions feel, and about what the families that support them feel. And the message through the article of children with disabilities having "life more infinitely precious than any explanation" is difficult to reconcile with "But we'd change a huge part of them if we could."

I don't doubt Rabbi Boteach's good intentions with his article. I think that he actually probably treats people with disabilities and their families with a great deal of respect and compassion. I just had a bit of trouble wrapping my head around this bit of writing. If it's clearer to someone else, and you think that I've misinterpreted, please leave me a comment.

Tuesday, 1 May 2012

Blogging Against Disablism Day

I don't often blog on Tuesdays. But today is Blogging Against Disablism Day, and I've wanted to participate ever since I started this blog.

What is Disablism?


Disablism is discrimination based on disability. I've faced a bit of it, but overall I've been very lucky. I know that many people go through a lot worse than I do, and don't feel as comfortable as I do standing up for themselves when it does happen. I've also been lucky to have a family to stand up for me when I've been unable to.

I've been working with people with disabilities since I was 15 years old, and blatant disablism has always been infuriating. However, it's the quieter forms that are more insidious and that don't get nearly as much attention.

The Disablism of Overprotection


For example...we are really reluctant to let people with disabilities (especially intellectual disabilities) make mistakes.

I once worked with a family where a young adult female with an intellectual disability really wanted to move into her own place. Her parents were very opposed to the idea. They were concerned that she'd made bad decisions about men in particular, and get herself into a bad situation.

I was willing to concede that she didn't have particularly good judgement when it came to men. But my record wasn't stellar, either. In fact, every one of my women friends that I could think of had one or more relationship skeletons that came out at least partly out of choices on her part that she thought were fine at the time, but that she really regretted later.

Of course we'd continue to make relationship safety skills part of the preparatory training for moving out. But was it really fair to say "No, you can't move out," because she might make a dating mistake? A budgeting mistake? A cooking mistake? I wouldn't be living by myself if we held people without disabilities to those sorts of standards...would you?

I don't advocate deliberately putting people in dangerous situations or situations that they can't handle in order to prove a point. And I understand the impulse to want to protect a loved one with a disability from situations where they might experience failure or hurt feelings or potential danger. But it *is* a form of disablism to deny people chances to learn and grow and discern just what they're capable of, even if that means experiencing failure or disappointment.

A well-rounded person knows how to deal with failure and disappointment. You can't learn those skills if you've never been allowed to experience either.

Let's reduce disablism by allowing people with disabilities to have a fully human experience, and all the associated emotions. It's often difficult enough to have to live with disabilities without the overprotection of others on top.

More about Blogging Against Disablism:  http://blobolobolob.blogspot.ca/2012/05/blogging-against-disablism-day-2012.html